The last couple weeks have not been without lots of frustrations. I have struggled to get meds that Lillian needs and am still trying to get coverage for her med that is 140.00. Her breathing med is out of stock until possible end of January. It seems every time I try to get something done, something else stands in the way. I have had to make phone call after phone call to get her feeds. I couldn't get another one of her breathing meds because insurance authorization. Many, many phone calls.
Her second infusion was last Wednesday. It went fine and just a little more streamlined. We got out 30 minutes to an hour earlier than last time. My mom came with us this time and even though I was told she could come back with us, she was not allowed. Lillian is terrified to be left alone and you know, sometimes, a mom just has to go potty. My mom, graciously waited, and was able to pick up lunch and she was fine with waiting, but I hated feeling like I wasted her day. So, fleshy Michelle was irritable in our treatment room, ready to take my frustrations out on the nurse, as the front desk lady had treated me rudely as well. Not to mention they are doing construction right next to the infusion center, so 4 hours of jack hammering, sawing and hammering also filled the room and contributed to my bad mood. The internal voice was saying, hey, it's not her fault all this is going on and they have to hear it all day long. So, I took a breath and let go of my grump. The infusion went well. I think she's only had one or two bowel movements today, which is a huge improvement so far.
I've been in a dark place since November. Really, truly struggling especially since her new diagnosis. Tears have come easily just in talking about it. I have felt that all too familiar feeling of failure to my other child at home. I have just been overwhelmed with the decision of placing her on this infusion. I've cried out to God to just tell me the "right" thing. I'm not sure I can even put a word to that season I'm coming out of. I'm coming out of it because, I'm seeking him daily with intention. I'm seeking out biblical teachers to give me tools. I'm seeking the prayer of those who love us. Guess what?? He's meeting every one of those needs. I became weary of telling people I'm ok. I wasn't....I'm not totally...but I will be. My circumstances are not likely to change. Not to say they won't...but I've been riding this wave for 15+ years, praise Jesus. I just want to share the recent scripture that broke the spirit weighing on me.... "He will feed his flock like a shepherd. He will carry the lambs in his arms, holding them close to his heart. He will gently lead the mother sheep with their young. " Isaiah 40:11 What a comforting, warming, overwhelming truth to hold on to. That's where my lamb is, close to HIS heart and He IS leading me and them.
Struggling or not, find time with Him. He is a rock and a fortress...He will hide you in the shadow of His wings.
Be blessed, this is the day that the Lord hath made, I WILL rejoice and be glad in it.
I’m sorry you and your family are going through this. I can read the weariness in your post. Isaiah 40:11 sounds perfect for what you’re going through. Isn’t that just like the Lord? He loves you and your daughter so much and I know He’ll continue walking with you on this journey.
ReplyDelete